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Author
Topic: Not so sure I can do this anymore... (Read 12765 times)

It has taken me two days to be strong enough to write this. And I am embarrassed and upset that I am thinking these things. But I am...

My husband is a long term survivor. He has been positive since 1983. He has tried a lot of different meds over the years, but 5 years ago he stopped taking them altogether. Still, he did quite well. He never suffered from much more than a severe ear infection or a somewhat persistent skin rash one summer. That is until this winter.

He is wasting away. Over 6 feet tall, he weighs maybe 150 lbs. He can't regulate his body temperature; he has thrush. No appetite, no energy... The doctor put him on Dapsone and wants him to start Atripla next week. He won't stay on it long if the side effects are too much for him. Patience with medication is not one of his fortes.

For the first time in a long time he is having to face that he has AIDS. And it is scary.

I have stood by him always. From the initial diagnosis - through AZT, DDI - through not telling our families to telling our families. Funeral pre-planning, loosing friends - the emotional roller coaster that this is. And I felt I was handling things well. But lately that is not the case. I can't bear it!

He is so frail to me, like a bird. He doesn't talk about it much - but he looks scared. He is angry. He is introspective. And he tells me he loves me a lot more than he used to (nice, but...). And I am terrified. I don't want to lose him! I want to be the brave, amazing wife that you see on TV movies - and I am not sure I can be. Lately I lock myself in the bathroom a lot and cry. I am frightened that I won't be able to cope with what is ahead. Won't be able to keep my promises of taking care of him at home. Won't be able to put up the brave front that he needs. I have no faith that the meds will work - even though rationally I have no justification for these feelings. I just don't know if I will be a help or a hindrance in the months ahead. I feel sometimes like I should just leave.

Honestly, I am not looking for pity. I know that is not what I want or need. I just needed to express these feelings to someone who understands. This is the only place I could think of to come.

Having been in the role of caregiver I feel your pain. Recently, when my friend Jim was dying, the hospice nurse and I were talking. I was telling her how Jim had been able to bounce back from so many different Opportunistic Infections, and other illnesses. She looked at me and said." You do understand that he is not going to bounce back from this one, dont you?"I guess you have to come to terms with that sort of reality. And I believe you need to make some time for yourself. Once a week do something that takes you totally away from HIV.

I have no faith that the meds will work - even though rationally I have no justification for these feelings. I just don't know if I will be a help or a hindrance in the months ahead.

Hi Trixie, It sounds like you've been your husband's rock for over 2 decades. Thank you for opening up to us here on AIDSmeds. We're gonna help you guys. Your husband has held up well for so many years - It sounds like only recently this winter his body is now strongly crying out for help since he stopped meds 5 years ago. Addressing what you said about faith in meds, I just want to briefly share a little hope about today's meds (for you to keep in your own mind, and maybe share this with your husband too) In many people's opinions, the meds of today are excellent compared to the older meds. Regarding Atripla, we have lots of members here who take Atripla, and some even Dapsone too.

Ask us anything and know we're thinking of you guys and looking out for posts from you

I am glad that you found this place. Having been there twice myself I completely understand how you feel right now.

Don't carry the guilt and all the emotions that comes with it. You can only do your best and I command you for standing by you hubby all those years.

I want you to try this; stop protecting him from seeing you crying in the bathroom. It is perfectly normal and you have every rights to share your feelings with him honestly. By doing so and especially like he said that he loves you even more now, it will see that YOU too is grieving and having difficulties dealing with all this.

Knowing full well how his health has been affecting you, might open doors for dialogue that I know will be very therapeutic for both of you. You can't forced him to do what ever he does not want to, but at least you can have peace of mind knowing that you gave it your best shot.

Your husband needs your tears. Sometimes you can be a caregiver and still show emotion. Your husband tells you that he loves you. Tell him that you love him too. Look him straight in the eyes and tell him. And let him see how you feel. Remember, your vow is "for better or for worse, in sickness and in health". It goes two directions, even when he is the one who is sick... right now you are the one who is "worse". Does that make sense?

It would be impossible for anyone to post a thorough response to your situation. You and your husband have been together for a very long time, created many stories together, loved each other. We do not know the whole story. But our hearts do understand your pain.

Do not feel guilty because you are in pain. The people on TV express a mere shade of what it's really like to experience the loss of a loved one. They make poor role models. Life is more nuanced, more gripping, more personal.

Your husband's illness does not necessarily have a predictable ending. While we all understand the bracing reality of "til death do us part", this does not mean that he will be gone soon. If you remember that either one of you could pass on today, through forces beyond your control, then you might start seeing that there is a way to still be sad, and then still appreciate the things like your husband telling you he loves you more often.

Thank god he does that. Do not deny your own feelings now for the sake of being strong. There is a strength unsurpassed in emotion. You might feel terrified right now that if you touch that place inside of you that the whole world will come crashing down, and you won't be able to be the strong woman you hope to be. I am telling you that you already are that woman. Share your feelings with your husband, and at least give him the chance to give you the gift of his love, and let him help you too.

There is no reason to be embarrassed with us. Much love. Puck

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Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

before anything i think its great that you decided to express yourself, sometimes we need to release somethings..i just recently became a member to this site to be able to express myself my situation is somewhat like yours.im 28 my fiance is 39 and after being together for 4yrs i just found out he has aids it has been ok lately he doesnt really talk much about that subject and i recently started going to a therapist just so i could express my concerns and anger towards life.. but one thing i do know is we should never lose faith as simple as it sounds i know its hard but at the end of the day he has survived so much and with faith he can survive much more..my fiance had his t-cells at 13 when his doctor informed us that he had full blown aids i thought i was going to die..

i couldnt even imagine what is going through his mind..nobody knows our situation thats very hard

i am so sorry that u and your husband are going thru this, it helps any i have down some research on the atripla and my hubby is taking it now so far so good next month is blood work so we will see how good he is doing

I am doing better today... The emotional tide seems to be turning in the opposite direction and I am feeling much more hopeful. We are having a beautiful, sunny day here. A walk together this morning helped to buoy both our moods and gave us time just to enjoy being together.

Everyone here has been great. I cannot thank you enough for the words of encouragement, your thoughts and your prayers. I feel much better knowing that wherever I am and whatever time it is - I can come here and find your support. With that I am starting to believe that I can get through the months ahead.

Trixie, you are an amazing woman. You are strong and you are doing more for your husband's health, both physically and mentally, than you know. Trust me, he knows it. Its also OK for you to have your moments of doubt and frustration and, as was previously mentioned, its OK for your husband to see you are only human and that you love him so much. I truly believe your presence is doing just as much for him as the meds would be.

Convince him to continue the fight for your sake as well as his. He is truly blessed.

Try to get him to talk. The more he talks, and even if some of what he says isn't the happiest stuff to hear, the less likely he is to fall into hopeless depression and then just give up. You might also ask him if there is anything he wants you to do or how does he want you to feel. And let him know some of your feelings (without dumping on him). Stay real with him.

There's no single way to deal with this so you have to use your instinct honed out of years of knowing and understanding him. And make sure you have support in your life too. That's essential for your own emotional wellbeing.

Are there any AIDS service organizations in your area which might be helpful to either or both of you?

Keep us posted on how it's going. Say everything you need to hear and forget about any ideas you have about complaining or otherwise putting yourself down. It's very understandable that you're having all kinds of feelings.

I had a fairly good - optomistic - week, but feeling a little unsteady today. Coming here helps, as always.

The meds came in the mail today. FINALLY. I think that may have a bit to do with my feelings. His too. But he does not want to talk about it. So, I will continue to support that decision and come here instead.

I'm sure you've been and continue to be a wonderful blessing for your husband. He is lucky you're his wife.

Those TV movies showing the brave caregivers never faltering just don't show them crying in the bathroom or while driving or wherever they occur. It would be unnatural if you didn't release your emotions sometimes. When we see someone we love in such a situation as your husband's fears and anxiety and doubts are bound to surface. Right now he is clearly sick and you cannot help having the mixed emotions and feelings you do. This is life and death you're dealing with and it's rarely easy. Give yourself the credit you deserve for all you've done. You are clearly a strong person and have been there for your husband all this time and are strong enough to keep supporting him.

Is there an AIDS Service Organization in your area, or perhaps a church or other entity, which might provide emotional and other support? Maybe there is an HIV caregivers support group or something like that. You've found AIDSmeds and many people here offer support and friendship but talking face to face with others in similar situations might help you feel less isolated and afraid.

I hope your husband has a great rebound from the new meds and wish both of you the very best. Please keep posting whenever you want and trust the good people here to offer support, advice, and their own experiences. It helps to know you're not the only one out there.

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Life is full of pain, I'm cruisin' through my brainAnd I fill my nose with snow and go Rimbaud,Go Rimbaud, go Rimbaud,And go Johnny go, and do the watusi, oh do the watusi

and just to remind you ---word on the street is new meds are coming soon and scientists are optimistic, so to find out about these new meds, well, guess what, we all have to hang tough honey! it's the only way to find out for ourselves

To be strong and supportive is a great thing to give to someone you love. May your strength and your love and the help. support help you both through. You can only do what you can do . One day at a time. And take time for yourself Maddie

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'I see your heartache, your eyes say it all, will always be there for you!' mum

Thank you all again for you kind words, thoughts, prayers and support.

I am still somewhat on my emotional roller coaster. Had more good days this week than bad ones. But the bad ones are starting to become a bit debilitating and worrisome. I have decided I probably need some professional help and maybe even some antidepressants. I am going to try and see someone this week.

He is dealing with his own issues - but now is starting to worry about me too. He is not good at expressing himself and my unhappiness is upsetting him. I know that is not good while he is trying to adjust to a new health regimen and drugs. So that has furthered my resolve to get some assistance for myself.

wow Trixie..I scanned some of the replies to you, but Im not really familiar with the new drug.. Ive lived with this for a long time myself (83 also).. I can tell you this from my own perspective.. Thrush.. the rashes.. all that makes you feel really, well... sub-human.. I was doing a lot of Gentian Violet at one time but it makes your mouth purple.. the thrush also made my lips crack and bleed.. it was embarrassing.. Diflucan (Fluconazole) is excellent.. I also used Mycelex, which is a lozenge, but its loaded with sugar (at least thats what it tastes like).. I was lucky to have a hell of a dermatologist that got rid of hundreds of little warts by burning them and using Alpha Interferon.. Now.. back in those days, I had kick ass insurance through the company I wound up having to leave.. they were self insured and payed for EVERYTHING.. you may not be in that position.. Diflucan was expensive, but not outrageous.. many times you can contact a drug company directly and tey will work with you on a sliding scale if ADAP is not available in your state..

The bottom line though, is that you will have a hard time saving someone who does not want to be saved.. Im not trying to be harsh, but I can sympathize with you completely.. My dad died when he just gave up.. not HIV.. it was diabetes and strokes that took him out.. but I watched him fade, and it was hard.. I wont go in to all the circumstances, but I always felt like I could have done something more or better.. but he played his part in his own demise.. he literally willed himself to stop living.. I don't envy you at all.. to watch someone you love go down like that.. Encourage him on the meds.. I won't take PIs becasue I don't like what they do to my body.. Sustiva and Trizivir are what ultimately worked best for me.. Sustiva can give you some psychedelic dreams, and Ive know people that were just "out" for days, but its a hell of a drug IMO..

Your "duty" goes only so far.. even true love can heal so much.. caringly.. lovingly.. explain.. what his unwillingness is doing to you.. get rid of that guilt.. its useless.. it may be that he, deep in his heart, does not want you to be witness to such a potential end.. but he CAN regroup.. he CAN get better.. the trick is that HE MUST TRY.. lacking effort, he as good as gone.. peace on your heart girl.. may you find a way..

Hanging in there at the moment. I have taken some time over the past six weeks to breathe and attempt to gain a little perspective about my fears. I realize I am always going to have them - but the intensity will wax and wain as days go by.

He is doing reasonably well on the meds so far. The side effects that plagued him the first week or so are mostly gone and he is doing well psychologically. His first appt with bloodwork since going on the meds is early in June - so we will see then if they are working. (I am only concerned because they are imported drugs from India and I want to be sure they are what we think they are.)

I am keeping my fingers crossed, my head high and my hopes even higher. And of course, I come here to learn and for that sense of "community" I need.

Well I'll be honest, Trixie, I read your story, and was crying like a baby. I do think that cowandalehouse hit the nail perfectly. You need to do what you have already done, show your emotion with him, let him see you cry. Who knows. Maybe he'll see how upset you are and go, well maybe I need to fight a little harder for my wife and myself. My father passed last year 6 1/2 months of cancer, many crys, but I'm in the film producing business so every trip down to see him, an hour away, I would film all the events, which actually helped me take my mine off the sad parts as I was busy doing something. Now I have priceless priceless videos of him, last bdays, xmas etc. I made him a glorious video to be shown at his calling and he got to see if before he left us. That is one thing that helped me, course, I was hoping to have him longer than 6 1/2 months after being told he had cancer. Do the best you can, cry in front of him, be strong for him as much as you can. Keep yourself busy as well, with whatever, just stay busy. If he does pass on, in hopefully MANY MANY years from now, you can rest assured that you were there and helped him as much as you can. And you will feel so much better.

My best friend, I recently found out, was positive and we have had GREAT talks, I've learned so much from him and he talks to me a lot about this and many things. I feel honored that he trusts me so much to talk openly about this stuff. I do hope you have a good friend you can "VENT" to.

theres a song I was thinking about from a kids film called the Land Before Time by Dianna Ross called, If We Hold Together, great song, go listen to it.

Thanks for the suggestion.... while I could not find the song, I did find the lyrics online. I have saved them for future inspiration!Feeling like a I am starting to deserve LTS status myself these days!

Hanging in there at the moment. I have taken some time over the past six weeks to breathe and attempt to gain a little perspective about my fears. I realize I am always going to have them - but the intensity will wax and wain as days go by.

He is doing reasonably well on the meds so far. The side effects that plagued him the first week or so are mostly gone and he is doing well psychologically. His first appt with bloodwork since going on the meds is early in June - so we will see then if they are working. (I am only concerned because they are imported drugs from India and I want to be sure they are what we think they are.)

I am keeping my fingers crossed, my head high and my hopes even higher. And of course, I come here to learn and for that sense of "community" I need.

Hope you are doing well too....

Hi Trixie. Well June's around the corner and fingers are crossed here for you guys too. India? Did I miss a chapter? Hugs, Alex

Doctor's appt is today - this afternoon. I am actually feeling pretty good about. He is really nervous though.The drugs came from India via a Canadian pharmacy. Cheap - but I hope they are what they say they are.....I will post again later.

After just 5 weeks on the meds his VL was down below 100!!!! The lab goofed up and did not run a CD4 count - but right now I don't care!! We are on cloud 9! This is the happiest sounding he has been in years.

I will right more later - but I wanted to share with everyone before I run out for the day's errands.